Sunday, October 16, 2011


God would not send you darkness, dear
If He thought you could bear the light,
But you would not cling to His guiding hand
If the way were always bright,
And you would not care to walk by faith
Could you always walk by sight.

'Tis true, He has many an anguish
For your sorrowful heart to bear--
Many a cruel thorn-crown
for your tired head to wear--
He knows how few would reach Heaven at all
If pain did not lead them there.

So he sends you the blinding darkness,
And the furnace of seven fold heat,
'Tis the only way, believe me
To keep you close to His feet.
For 'tis always so easy to wander,
When our lives are glad and sweet.

Then nestle your hand in your Father's
And sing, if you can, as you go;
for your song may cheer one behind you
Whose courage is sinking low;
And well if your lips do quiver.
God will love you better so.

Wednesday, October 12, 2011


Sometimes I feel like there's not much I can do to help Max besides shower him with love and feed him. One of my major concerns is making sure he's developmentally on track. I was starting to get even more worried because he's 5 months and hasn't rolled over yet. But worry no little man rolls. Part of the hold up was that he wasn't allowed to be on his stomach six weeks post op. After that, he never liked tummy time. He would cry and scream, which is unusual for my sweet guy. I started reading and researching online how to help him and one suggestion was to put a flat pillow under him to prop him up a little bit. I did that, and within 10 minutes he was rolling over. Needless to say, I'm really proud of him. Besides that, I think he's still on track with most babies his age. I am going to take him to get evaluated by a therapist just to make sure, but the pediatrician thinks he is doing well.

It's little moments like these, that make me really sad I missed all of this with Clare. I now know how time with my babies is really precious and to not take it for granted.

Friday, October 7, 2011

Be not afraid, I go before you always...

With all of Max's heart issues he did not receive a circumcision when he was born. I really struggled with whether or not go through with it or not. I consulted friends with boys to make sure everyone was still doing this. I talked to Dr. Bree and she gave me stats about the different races and trends with circumcision. Ultimately, the argument that made the most sense was that it was a lot easier to do it when they are younger and you would hate for him to be 12 and asking to have it done. We were concerned about putting him through one more thing, but our cardiologist suggested that this would be the best time. He referred us to a pediatric surgeon to have the procedure done. The pediatric surgeon came out to the the Cy-Fair Texas Children's location and we met for a consultation. He said that this would be pretty routine and he had already spoken to our cardiologist about having it done. It was a Monday and he said that we could get it done Friday at a outpatient surgery care center. The outpatient center refused to allow the procedure with all of Max's conditions, so we waited a week and were scheduled for a Friday at pediatric surgery at Texas Children's. Friday came and we made our way down to Texas Children's. Max had to be NPO (Latin for nil per os or nothing by mouth) after 11pm and the procedure was at 1:00. The pediatric surgeon asked us before the procedure if we were nervous and I said, "Well I'm always nervous when it comes to this little guy." The surgeon said he wasn't nervous at all. Famous last words. We waited for about 30 minutes and to be honest I was second guessing everything. I was a mess. Finally the doctor came out to the waiting room and said everything was great and that Max was a little upset, but he should be good. Then I could hear my sweet boy screaming. A little upset!? It was the worst screams I have ever heard from him and my heart sank. Why? Why did I put him through this? I took him from the nurse and he was inconsolable. I thought that feeding him would help, but he refused food. We couldn't stay in the waiting room because he was disturbing everyone around. We decided to go outside to try to calm him down before we drove home. That didn't seem to help either. Finally, I decided that maybe we should just try to drive home. Edgar was in a separate car because he left from work to meet us. Max cried the all the way home. When we got home, as we were taking him out of his car seat, we noticed blood on his shirt. We rushed him back to the changing table to check his diaper and as we laid him down I could see the blood through the diaper. What was going on? We opened it and he was covered in blood. Not just a little. A lot. I was terrified. I began shaking and I didn't know what to do. I kept saying, "Who do we call!? Who do we call!?" I ran to the computer to look up the surgeon's number and Edgar came behind me and said, "Let's just go up to the pediatrician's office since it's right around the corner." We didn't even think. We didn't even put him in the car seat. Edgar held him as I drove the 2 minutes to the pediatrician's office. Not the smartest parenting, but we were out of sorts. When we arrived to the office, my hands and legs were shaking. It was the worst fear I have ever had in my life. They put us in the triage room and a nurse came in immediately to help us. She charted as we spoke and went to get Dr. Patel immediately. He came in and looked at Max and then said he was going to call the surgeon. I just began to pray. I was so afraid to lose him and maybe it was an overreaction, but seeing your son bleeding the way he was, terrified me. A friend texted to check on us and I briefly said, "pray everything did not go according to plan." Dr. Patel came back in and said we needed to go back to Texas Children's immediately. I left to get the car seat, and on the way called Dr. Bree. She told me that if it was a lot of blood he might need a transfusion and to be prepared to stay over night. We drove all the way back in traffic to Texas Children's. At this point, Max had calmed down some and his color was good, so I knew that his blood loss would probably not warrant a transfusion. We arrived and the surgeon took him back again. I had to leave. I couldn't sit there and watch my son cry again. I went down to the milk bank to pump. Just as I returned, the surgeon was talking with Edgar and he said that Max had been stitched up. He explained that Max's blood pressure probably rose too high and it busted the circumcision. He said thankfully, a piece of skin fell over the blood vessels and stopped the bleeding, but it wouldn't have stayed like that forever. He was very apologetic and said that normally, at this age, they preform these procedures in the OR with total anesthesia. He mentioned the risks for Max being in the OR and with total anesthesia, so he thought he could do it in office with local anesthesia. He gave us his cell phone number and told us to call him if anything happened. The next morning he called to check in with us. The following morning, Dr. Patel called to also check on him.

I firmly believe that luck of his skin falling over the blood vessels was not luck at all. Once again, the power of prayer rescued us. I felt the Lord's presence when I was a wreck in triage, just after texting my friend. A sudden rush of peace came over me. I looked at Max and he evened smiled.

"Be not afraid, I go before you always. Come follow me, and I will give you rest."

Wednesday, October 5, 2011

5 Months Today

If I had a dollar for every time Max smiled, I'd be a millionaire. He is the happiest baby ever.

Clare has been sick since Sunday, so we've just been hanging around the house. Thankfully Max did not pick up whatever Clare had. I was trying to hard to keep them apart, but he absolutely loves watching his big sister. This afternoon, we went outside to blow bubbles and Max was laughing as Clare chased and popped each bubble. He loves it when she makes faces at him and he loves it when she kisses him. Before he was born, I wondered how I could possibly have enough love for two beautiful children. I now realize that the love for Max is multiplied because of Clare. I pray that we will be able to have more children to share in the beautiful love of siblings.

We go back to Texas Children's November 7th. Hopefully we'll get a better idea of what comes next for our little but mighty Max. He will have a second surgery sometime between November and January. This surgery is called the Glenn and is a setup surgery for the Fontan. Max will only use the right side of his heart.

Although I am amazed at what they are able to do for him, as a mom, it's terrifying. Being home since July has given me the time to bond with him that I didn't have when he was first born. I know my son. I know what makes him laugh, what makes him cry, I know what he smells like, and how he snuggles under my chin. And this is why I'm so scared. I'm so in love with him that I'm afraid to lose him. These months have been glorious, and at times, I forget the reality that my son is faced with. I know that God has a plan for Max. I know that if anything happens he'll be an angel in Heaven and this should give me peace, but it doesn't. So I'm dreading November. I'm dreading what the doctors will tell me. I don't want this vacation to end...